Abstract
Bronchiectasis is an increasingly common chronic respiratory disease which requires a high level of patient engagement in self-management. Whilst the need for self-management has been recognised, the knowledge and skills needed to do so- and the extent to which patients possess these-has not been well-specified. On one hand, understanding the gaps in people's knowledge and skills can enable better targeting of self-management supports. On the other, clarity about what they do know can increase patients' confidence to self-manage. This study aims to develop an assessment of patients' ability to self-manage effectively, through a consensus-building process with patients, clinicians and policymakers. The study employs a modified, online three-round Delphi to solicit the opinions of patients, clinicians, and policymakers (N = 30) with experience of bronchiectasis. The first round seeks consensus on the content domains for an assessment of bronchiectasis self-management ability. Subsequent rounds propose and refine multiple-choice assessment items to address the agreed domains. A group of ten clinicians, ten patients and ten policymakers provide both qualitative and quantitative feedback. Consensus is determined using content validity ratios. Qualitative feedback is analysed using the summative content analysis method. Overarching domains are General Health Knowledge, Bronchiectasis-Specific Knowledge, Symptom Management, Communication, and Addressing Deterioration, each with two sub-domains. A final assessment tool of 20 items contains two items addressing each sub-domain. This study establishes that there is broad consensus about the knowledge and skills required to self-manage bronchiectasis effectively, across stakeholder groups. The output of the study is an assessment tool that can be used by patients and their healthcare providers to guide the provision of self-management education, opportunities, and support.